Thank you to the British Journal of Nursing
I CANNOT THANK THE BJN enough for the incredible honour of having been short-listed for Nurse of the Year Award.
It would not have been possible without the profound experience my wife and I have shared, growing always in love, understanding and partnership, through every moment of indescribable agony she has experienced with Severe Myalgic Encephalomyelitis (M.E.)
The award is a confirmation of all that is good and noble about the nursing profession, for even though I was only a runner-up last night, it is still an extraordinary achievement for an unpaid nurse carer to be recognised and validated in this way.
I had to make the difficult decision not to attend the Ceremony in person. It highlights the stark reality of caring for someone with this devastating, neglected neurological disease. My priority has to be my wife's health. In the end there is no greater choice.
People involved in the care of people with Severe/Very Severe ME have to make these choices every single day. I was proud to have been with the person who needed me, despite the loss and the cost.
My absence, on some small level, was a reminder of the many who could never attend such a wonderful, sparkling gathering, for the environment itself, the noise, the light, the people, the perfumes, the food, the movement, the alcohol, are impossibly out of reach for a person with Severe ME.
I would have loved to attend the award ceremony, the height of my nursing career.
Living and caring as I have for my wife, with an illness profile as great as someone with heart failure, late-stage AIDS, Multiple Sclerosis or a person undergoing chemotherapy - for well over twenty years, I have witnessed unspeakable, intense physical suffering, without a moment's relent, hope of medical treatment or a cure.
When you are thrown in at the deep end of this neglected, devastating neurological illness, it redefines your whole life. In the absence of medical respect, representation and expertise, especially within the profession you love passionately and believe in, you have to speak up, you have to try to forge a pathway through it, to help your loved one and all those who suffer like her.
It opens your heart. It creates a true vision. You cannot daily witness what I have seen, you cannot hear the pain-filled unjust stories that I have heard, nor been gutted by the pain of yet another death, down all these many years, without making a stand, fighting for the truth, challenging the status quo, the misrepresentation and mistreatment that allows the most ill to be completely abandoned and neglected, abused, left to die, horrendously. It is that serious.
The BJN award is about the shining of a light. Last night it illuminated serious neglect. Just being shortlisted has helped raise the profile of people with Severe ME, shining a much needed light upon their abandonment and their plight, greatly inspiring me to never stop fighting for the separation of ME and CFS and the creation of new biomedical care pathway.